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Knowledge is power: Add your helpful neuropathy resouces and links

Posted by John, Volunteer Mentor @johnbishop, Dec 4, 2021

If there was one suggestion I could make to help a person suffering from neuropathy it would be learn as much as you can about your condition. The more you know, the better questions you can ask of your doctors and health care team. Hopefully, helping you find a treatment plan that provides relief for your symptoms.

Early in my journey I was fortunate enough to find a support group that was not too far away, The Minnesota Neuropathy Association. Sadly, the group had to disband and members had to look for support elsewhere. Being able to connect with other people with similar symptoms and conditions was what got me to learn more about neuropathy and what others found helpful.

The reason I started this discussion was to have a place where members, including myself can share information about neuropathy -- What is it, how is it diagnosed, what causes it, what options are available for treatment, what's the prognosis, and on and on...

One of my early finds thanks to the Minnesota Neuropathy Association was a series of short easy to understand videos by Matthew B. Jensen, Assistant Professor of Neurology, University of Wisconsin — Introduction to Neurology: Level 1 that can give you a better understanding of the different conditions:
— https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

Let's learn together and keep learning...knowledge is power! Have you found any articles that turned on the lights for you?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Berk | @gba | May 30, 2023
In reply to @lagrange5 "Thank you, John, this was extremely helpful." + (show)
@lagrange5

Thank you, John, this was extremely helpful.

Jump to this post

Thanks John, I am getting close to to trying Walkasins. I will advise as to my progress.

REPLY
mary18446 | @mary18446 | May 30, 2023
In reply to @ray666 "Hello, all! Two thumbs up for "Knowledge is power!" (I'd put more thumbs up if I..." + (show)
@ray666

Hello, all!

Two thumbs up for "Knowledge is power!" (I'd put more thumbs up if I had them.) The onset of my PN symptoms was several years ago, although it wasn't until only last fall that my PN was finally diagnosed (predominantly sensory-acquired axonal peripheral neuropathy – quite a mouthful!). For several weeks, I moped around, certain there was little to nothing I could do for myself. One day, I said to myself, "Snap out of it, Ray!" and put together a 3-ring notebook in which I collect all the best* PN information I find, as well as make notes of questions to ask my doctors. (*I say "best," because there's so much misinformation out there, especially online; learning which sources are authoritative and helpful is absolutely critical.) Maintaining that binder not only keeps my spirits up but also is a great reminder of my own role in taking good care of my health. So again, two thumbs up for "Knowledge is power!"

Ray (@ray666)

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Ray,
Do you see a specialist for the PN? I ask for guidance and knowledge. Been pretty down about numbness In feet and hands.
Thanks,
Mary

REPLY
1 reply
Ray Kemble | @ray666 | May 30, 2023
In reply to @mary18446 "Ray, Do you see a specialist for the PN? I ask for guidance and knowledge. Been..." + (show)
@mary18446

Ray,
Do you see a specialist for the PN? I ask for guidance and knowledge. Been pretty down about numbness In feet and hands.
Thanks,
Mary

Jump to this post

Hi, Mary

I do see a specialist for my PN. He's a neurologist with an emphasis on physiatry or whole-body rehabilitation. I found him thanks to my primary after I'd expressed a wish to find a more broad-minded neurologist who would treat my PN but also take into account my bad feet (severely flat), bad knee (arthritis), and hips (also arthritis). If your primary doesn't know of such a doctor, you might do an online search under "Physiatry" in your area, Good luck!

Ray

REPLY
1 reply
mary18446 | @mary18446 | May 30, 2023
In reply to @ray666 "Hi, Mary I do see a specialist for my PN. He's a neurologist with an emphasis..." + (show)
@ray666

Hi, Mary

I do see a specialist for my PN. He's a neurologist with an emphasis on physiatry or whole-body rehabilitation. I found him thanks to my primary after I'd expressed a wish to find a more broad-minded neurologist who would treat my PN but also take into account my bad feet (severely flat), bad knee (arthritis), and hips (also arthritis). If your primary doesn't know of such a doctor, you might do an online search under "Physiatry" in your area, Good luck!

Ray

Jump to this post

Ray,
thank you for the information. I am so grateful for your guidance and knowledge.
God bless you.
Mary

REPLY
icelander19 | @icelander19 | May 31, 2023

I'm curious about the different types of neuropathy. What has caused your neuropathy? Mine apparently is CIPN a result of chemo drugs for my pancreatic cancer. But the symptoms have changed over the last couple of years. More burning in my feet, more numbness and more loss of balance when standing in the shower etc. Should I be seeing a neurologist to get some help, saw one who wasn't much help. I am going to try CBD oil or creams but haven't found a place to purchase yet in Canada. Thoughts from others would be appreciated. Thanks

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 31, 2023
In reply to @icelander19 "I'm curious about the different types of neuropathy. What has caused your neuropathy? Mine apparently is..." + (show)
@icelander19

I'm curious about the different types of neuropathy. What has caused your neuropathy? Mine apparently is CIPN a result of chemo drugs for my pancreatic cancer. But the symptoms have changed over the last couple of years. More burning in my feet, more numbness and more loss of balance when standing in the shower etc. Should I be seeing a neurologist to get some help, saw one who wasn't much help. I am going to try CBD oil or creams but haven't found a place to purchase yet in Canada. Thoughts from others would be appreciated. Thanks

Jump to this post

Hi @icelander19, Curiosity and learning are a good thing. I have idiopathic small fiber peripheral neuropathy which my neurologist thinks might be hereditary based on family history. Matthew B. Jensen who is a neurologist in Madison, Wisconsin has a YouTube channel with a lot great videos on the types and causes of neuropathy that you might find helpful for learning more - https://www.youtube.com/c/MatthewBJensen.

You also might find the Foundation for Peripheral Neuropathy site helpful - https://www.foundationforpn.org/living-well/.

REPLY
1 reply
icelander19 | @icelander19 | May 31, 2023
In reply to @johnbishop "Hi @icelander19, Curiosity and learning are a good thing. I have idiopathic small fiber peripheral neuropathy..." + (show)
@johnbishop

Hi @icelander19, Curiosity and learning are a good thing. I have idiopathic small fiber peripheral neuropathy which my neurologist thinks might be hereditary based on family history. Matthew B. Jensen who is a neurologist in Madison, Wisconsin has a YouTube channel with a lot great videos on the types and causes of neuropathy that you might find helpful for learning more - https://www.youtube.com/c/MatthewBJensen.

You also might find the Foundation for Peripheral Neuropathy site helpful - https://www.foundationforpn.org/living-well/.

Jump to this post

Thank you John. Will check these out.

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